I am a 60-ish married engineer that has dealt with moderate eczema my entire life, primarily through the use of topical steroids. In early 2012 things started going wrong, and this blog is a personal diary of my journey through Topical Steroid Withdrawal, also known as Red Skin Syndrome, Topical Steroid Addiction, or Steroid Induced Eczema. I have been completely free from all steroids since July 9, 2013. Please see www.itsan.org for more info and feel free to post here!

Saturday, April 30, 2016

Saturday, April 30, 2016 - The Aron Regime - A Conversation with a Supporter

Regarding my Fukitol List Item #2, the "Aron Regime", the following exchange took place between Jeff Kastner and myself on the "Topical steroids - TSW / TSA / RSS - an alternative (AR)" Facebook page. It happened late last night and when I got up this morning I was banned from the group and this conversation no longer exists. I figured this would happen, so I copied it before I went to bed. Here it is. I do not know if Jeff ever responded to my final question. Jeff, if you read this, please post your answer. For those not wanting to plow through the conversation, let me summarize it for you. Jeff and Dr Aron believes that all problems associated with the nonexistent "TSW" is due only to an underlying staph infection that makes the eczema worse. My question to Jeff is that most of my symptoms that I have experienced for the last three years are not associated with a staph infection in any way. What caused those symptoms?

Note: Jeff brought up several things that I intended to address, such as Briana's experience, my comparison to heroin addiction, TSW vets, etc. Also, if I were to do it again I would be more careful with my words. It was nearing 3:00 in the morning and I'd had a couple margaritas. :-)

Just some odd questions I've been thinking lately. So all of us know a little about tsw right? My question is, since it exist and actually affect thousands of people, although healing process takes LOTS of time, but you can still see improvement in them and why does that happen ( the healing) ? Since the staph is out of control without antibiotics?

PS not trying to confuse or give any wrong info. Just want to know more about what you guys think.

Comments

Michelle Zaparaniukwell first off I think staph is a problem for most but not all, also those TSW people are still often on other meds...just not steroids, the successful ones often radically change diet as well and lastly I think very few actually totally heal. Overall it is a lot if unnecessary suffering in my opinion...I have done TSW and Dr. Aron's plan and know what I would choose..just my opinion

I don't think TSW exists at all. It's a social network driven phenomenon but there's zero proof it exists. The doctors who brought TSW to the public were witnessing the same thing that every doctor, at that time and today, was seeing; when you give TS without addressing the staph element, the skin gets worse. When I've looked into each doctor's approach at that point, there's nothing special any of them did.. no studies, no specific protocol to prove/disprove TSW. Instead, they speculated.. and just went with it. I even contacted Dr. Rapaport and asked him about his specific process of discovery and he replied that he saw what the steroids were doing so he knew people needed to stop taking them - that "it wasn't too hard to figure out". That's bad doctoring 101. He created this network of fear because people naturally trusted a doctor must know more than they do but in fact, he's simply got it wrong - as most all other doctors agree. He then put extra work into creating papers to try and create a name for himself instead of spending that time trying to scientifically affirm his theories - which is what he should have done.

So to your question.. it's a good one and one I've considered as well. First off, consider that the majority of people going through TSW do not heal. If you check out the forums, there are people who have been doing the process for years and they're "ok" with raising the time limit after it doesn't work. "I thought I would heal in 2 years but I guess it might take 3" is a pretty common thing to hear. 3 turns to 4 and so on. Many people talk about how they "get better" but is that healing? No.

Why do some people get better? It's quite common to see people finally doing all the things they should have when they start down TSW. They hear about the pain and suffering and they decide to 100% commit to diet (often for the first time) and stop eating tons of sugar, greasy fried foods, etc. They "get better". Also popular to TSW now is moisture withdrawal. What happens when we stop providing staph the means to spread so easy while fine-tuning diet? They "get better". How many people start taking other medications they never took before and suddently, they "get better".

You can take any percentage of the population with skin problems and evaluate them over time. Some of those people will be better after time, regardless of what they do. That's the nature of skin. In time, it improves for some and gets worse for others. The mistake with the TSW phenomenon is that people assume it's a cause/effect relationship of TSW - because the "lucky" percentage who go without treatment and "get better" will post pictures and say "hey look what TSW did for me?!" You see it often in the TSW groups that someone will post and several comments will follow with "Wow.. I was getting ready to give up but you have given me hope so I'm sticking with it" or "that's just what I needed to see today as I was having a really bad day". It spurns people on, but.. the more important question: How many people are actually healing from TSW? From the time I've spent in those groups, it looked like maybe 10% overall would simply improve and very few of those would actually completely heal. That's quite a deviation from the promise that TSW will completely heal. Why is there a "Long Term Vets" section on the itsan website where people admit being in TSW for over 7, 8 and even 10 years.. and still not healed?!

It is a fact that most people going through TSW will not heal. Some may improve for reasons cited above or other reasons none of us may know (environment/geographic location/food choices or vitamins specific to that single person, experimenting with other drugs, etc) but most are suffering for an imaginary condition of "steroid dependence". Doctors who purport the condition/success of TSW (and there are very few) without really understanding it have a lot to answer for. Unfortunately, it's something that will further snowball until the treatment of AE is changed, antibiotics are included as used in the Aron Regime, and people are no longer needing to look for a reason why their skin in seemingly worse after conventional treatment. The "all natural" allure of TSW sounds intriguing after conventional treatment fails. Unfortunately, it's not the answer. If TSW was true, there could not be thousands of people who start the Aron Regime (many of them, months and years into TSW) showing zero signs of steroid dependence - and weening off of topical steroids in time -- and all the while healing.

David BuppJeff, I am nearing my third year of TSW and I have been lurking in this group for a while, afraid to speak up lest I be banned from the group. The Aron Regime is fascinating to me for several reasons and I would like to stick around, not only to learn more about it, but also to defend TSW only when there is mis-information spread about it. I must say that your post is almost as far from the truth as possible. I am one of those "long term vets" that you speak of, and I have heard and done most everything related to TSW. Diet changes? Been there, done that. Infection treatment? Staph, MRSA, yeast, been there done that. Are you, or anyone else, interested in what I have to say? If not, and I am banned, my intentions are to create a Facebook group where there are no limitations on who can join and what is posted. There's a need for that in my mind because anti-TSW's are banned from TSW groups and anti-AR's are banned from AR groups, so a lot of mis-information is spread on both sides, as is evidenced by your post. I would much rather engage in a constructive conversation here. I belong to ITSAN of course, but I am not officially associated with it in any way or form, and in fact many of my posts have been removed from their forum. I merely seek truth. Do you?

David BuppIn the meantime, I'll give you a little background. 61 years old, born with eczema, and used topical steroids since they were introduced. The hydrocortisone that you can by in a 3-pack at Costco was a prescription drug back then, and was considered strong stuff. I was told as a child I would grow out of it, but never did. I had moderate eczema primarily on my fingers that was fairly well controlled with topical steroids that would increase in strength as years went by. About 13 years ago I moved from Seattle to Dallas and my eczema got worse, covering my arms. My dermatologist prescribed strong cream and even stronger shampoo (clobetasol). Eventually, nothing worked and I started the classic RSS symptoms. It took me a year or so of suffering and going through several dermatologists until I found ITSAN. I literally had every single symptom. The next dermatologist told me I could not go cold turkey and must taper off (sound familiar?) and convinced me to go even stronger creams and shots. When that didn't work he did a skin biopsy that showed a "drug reaction" (and no infection) and he literally walked me to the door and told me to come back when I needed steroids. At that point my GP sent me to the experts: The dermatology department at UT Southwestern, one of the leading dermatology medical facilities in the US. I consulted with an intern and the University Dermatology Department Chair, and they agreed to help me through TSW, even though they chose their words very carefully, as 3 years ago TSW was not the documented condition it is today. It's been a rollercoaster ride, but they were amazed at my progress. Several times I have been tested for infections. Sometimes positive, sometimes negative and when treated it made no difference to my condition at all.

David BuppYou mention that positive results are the result of dietary changes, but Dr. Rapaport has stated that diet changes make no difference at all, and I am an example of that. I tried a few times to eat better, but it made no difference and I essentially ate like a pig through the worst parts. I lost 25 pounds because my body was pouring out heat. I was a blast furnace that downed milkshakes, hot chocolate, sweets, anything that gave me comfort, and I still healed. To be honest, the ITSAN support groups drive me nuts as everyone seems to want to try diet changes, probiotics, homeopathy, salt baths, all kinds of crap. It's a normal human response to try to make themselves feel like they are in control. They are not. If you go TSW, it runs its course in its own time.

Jeff KastnerYou and I sound like we share very similar opinions about diet. I am not a believer that diet will affect eczema for most people. It certainly didn't for my son and we tried everything. What I was saying above is that a small % of people going through TSW get better and they tend to be all the motivation for the vast majority who never heal. These healed people tend to be people who make several lifestyle changes at once.. and they see an improvement.. and then they holler how TSW works, when it has nothing to do with it. But there is a percentage who will improve with diet. I see it in Eczema Parent FB group every once in a while.. .where a Mother shows a before/after and excitedly announces that "all I did was remove dairy" or something to that affect - and the results do look impressive. Lots of causes for eczema, right? My point is that it works for some but I definitely believe the majority to be small. I will then see that Mom telling everyone to "stop dairy and you'll be healed!" (as an example) but like you, I just have to shake my head because I know that diet will not affect eczema for most. How many times do you hear to "heal the gut and the skin will follow!" ? If only it were that easy. It works for very few. I say let's heal the skin (the largest organ) and the gut will follow. And homeopathy? Salt baths? Stephanie's magical balms? You may as well rub kool-aid on your skin.

David BuppYup. Homeopathy is complete bullsh*t. As is most, if not all, alternative medicine. I do not agree with your assessment that only a small percentage of those going through TSW heal. My personal experience and the majority of those I am in contact with going through it DO heal. Not sure where you get that information. I do agree that it takes many people longer than expected. Not me though. I knew, as a long time steroid user that it would take me a very long time. It also depends on your definition of "healed". I describe myself as "95% healed" because I look, act, and feel completely normal, but the tops of my feet and fingers still have itching issues. Nothing I can't handle, and otherwise I feel fantastic, and they are slowly improving. And I have introduced no steroids of any type into my body since July 9, 2013. Zero. There's a phenomenon related to TSW that I have experienced with TSW that may lead to your conclusion that not very many people heal: It's a horrific experience, and once you get through the worst parts and start to feel normal again, the last thing you want to do is re-live it by going on FB or forums. I have a blog that I have abandoned for months because I do not feel like going "back there". Maybe its a form of PTSD, I don't know, but it takes effort. Every once in a while a statement like yours is made on the ITSAN forum and the result is a people coming back and saying things like "sorry, I am healed and find it difficult to come back here to post" or some such. There's a lot of healed people Jeff. I stay active partially because I have become a bit of an anti-steroid activist and have actively taken on companies like Baby Pibu that markets a hydrocortisone product for babies.

Jeff KastnerI have an itsan forum account and a best friend who's FB account allows me to visit the TSW forums quite frequently (though I've become quite bored with it in the last few months so rarely do anymore). I've probably been a member longer than most everyone in there. You can go there now and find very few "I'm healed" posts. I have seen the same people posting for the last couple years. I see kids that could have been healed in 2 weeks, with quality of life fully restored, still suffering after several years, because their parents are convinced that TS are the issue and they're simply not. It's a phobia and unhealthy. What's happening is a culture is being created whereby it's "ok" for children to suffer for years because they're "warriors". None of these kids care about being a warrior as much as their parents do. Topical steroids aren't hurting these kids - the bacteria is when the inflammation is reduced. It's allowed to run rampant so then, of course the TS get blamed. How do I know? Not a single kid, out of hundreds who were in TSW, have come over to the Aron Regime and suffered from any kind of dependency. I don't believe the junk about people moving on. The Aron patients are usually the most severe around. I will contend that when TSW gets to be too much for some, that's when they go to Dr. Aron. These are the worst of the worst.. and not a single person is affected by TS? And why do these people, most of who were equal or worse than most TSW people, stick around? There are thousands in the group who extol the Aron Regime. Why are there only dozens in the TSW group who stick around? Why do I see kids in there who are 4 years in TSW and still suffering from steroid dependency? It's because they're suffering from a wrong self-diagnosis (most often a Mom who thinks all natural is the best way to heal). Why are there people 7, 8 years and more in the itsan forum and still suffering?

David BuppHonestly Jeff, I think there is a fundamental difference between children going through TSW and adults. Being an adult, obviously, I cannot vouch for, nor do I personally know, any children going through it, and when I talk about those successful with TSW, I'm referring to adults. That's one of the reasons I don't blow off AR, and you will not get arguments from me about AR regarding children. I am not convinced it's not the way to go if you are a child. I'm not advocating it either, mind you... I just don't know. One of the reasons I say this is that eczema is a childhood disease. I don't know how many times I was told when I was a kid that I'd grow out of it. Seems if a child has a terrible experience with topical steroids, however he or she gets through it, whether it is through TSW or AR, he or she will likely still have eczema until they really do grow out of it. I am convinced, however, that what I have had my entire life since adulthood is not eczema, but rather it was steroid-induced-eczema. I am fully convinced that my only recourse was TSW. When I am 100% healed, I am convinced I will not have eczema at all anymore. I already don't where I had it before. The palm side of my fingers, where I had eczema my entire life is completely normal. Not only that, but the skin thinning that I always had is going away. My hands are durable like they have never been before. I watched all those AR promotional videos, and they were all children except for one adult, and that adult was still on steroids and antibiotics. In fact, every testimony I have ever heard save one or two regarding AR is that they are still on it. I guess I don't quite understand how this is different than putting a heroin addict that is going through terrible withdrawal symptoms back on heroin. Can you put them back on heroin then slowly reduce the dose of heroin to get them cured? Perhaps you can. But cold turkey worked for me. Like I said when this conversation started, I do not intend to discredit AR, but only to give TSW a voice as it has worked for me. And the "moving on" thing that you refer to as "junk"... I guess you just called me a liar, but hey, that's okay Jeff. I know what I feel. And blaming it all on bacteria is junk to me. Virtually everyone I know going through TSW, including me, has been repeatedly tested for infection and the treatment, when it was warranted or not, has made no difference. We have staph and bacteria on our skin all the time. All the time. If you swab it it will show up positive. I've had actual bacteria and staph infections before and it's a totally different animal that usual TSW symptoms. Dr Aron's treatment isn't effective because of the antibiotics, its because he is putting the addict back on heroin. Did you watch The Doctors show with Brianna going through TSW where they were all smug at the end for determining all her symptoms were the result of infections? It was edited to make her look like she was so thankful they figured out what was wrong. She has continued to post, as I am sure you are aware, and the result of the treatment for her infection? Made no difference at all. Just like me.

Jeff KastnerI actually agree with most of what you say.. including the fact that many adults way be dealing with something else, though I don't believe it's dependency. For adults suffering, they are usually the worst of the worst.. people with severe skin. I think many adults have used too many TS over the course of a lifetime. They used to prescribe the stuff like candy.

Don't get offended now. I had to smile at a couple of your above comments where you told me my post was as far from the truth as possible. I thought.. "Hmm... you mean, you have a different opinion?" It's easy to feel attacked when you view the complete opposite side. I don't agree with TSW at all and think it's an imaginary made-up condition, so that is true.. and I can't hide how I feel about that... but no disrespect to you. I must confess that when I used the term "junk" it's because your comment immediately reminded me of what Joey continually says in an effort to keep morale up.

Heroin and TSW? I see that comparison drawn a lot in the TSW groups a lot. They are nothing alike. Heroin is medically proven to be highly addictive - an opiate that triggers dopamine. TS are only thought to be by TSW groups and Dr. Rat, who can't even give an explanation as to why, other than offering a far-fetched theory on nitrous oxide levels. There's nothing in the medical literature anywhere that can prove TS is addictive in any way.

To your question though.. here's how it's different. My son suffered severely under conventional TS prescriptions. He would get burning inflamed skin immediately following a round of TS and from the time we started TS (at 2 years old), the skin only got worse after every round of TS. It was 10X worse in the 3 years that followed. When I found Dr. Aron, he said "stop doing TS! You're making it worse. That's highly infected!" In one week of combining TS with antibiotic, he was sleeping through the night for the first time ever. We put 6 apps a day on, then 5 and 9 1/2 months later, just as needed. Today, I might put an app or two on every couple months. We don't think about eczema. He lives life and loves it. He's not some heroin-like addicted TS addict. That is a TSW way of thinking only. Doctors don't think that way, nurses, people using the Aron Regime, my current doctor who knows nothing about AR. It's a belief system instilled in the TSW community. There's no merit. My final thought on this.. if over 5,000 people in the group are using the Aron Regime, and not a single person is having a TS side effect, why do people care.. even if they want to call that addicted? If my son maintains perfect skin, has no side-effects and a full quality of life, using TS once or twice every couple months, feel free to call him addicted!

Brianna is a perfect example. I have followed her posts and she seems very sweet. I've always liked her but her problem is bacteria. The Doctors were right but she has gone out of her way to try and prove them wrong. When I read her posts, I can tell where her line of thinking has gone wrong each time.. People do that when they try to convince themselves they know what is best. She had a doctor swab her and prove to her and she was immediate to say in the TSW groups that they were wrong.. on the same day the video was released before she even checked anything out. She had already convinced herself. If she got on the Aron Regime, I would be willing to bet her pain and suffering would be gone for good. She wouldn't be addicted but would be managing with a medical prescription. No side effects and quality of life restored. If that's addicted.. sure beats suffering the rest of her life for a cause.

Keep in mind that there are people on the Aron Regime (AR)who were diagnosed TSA by Dr. Rap himself and they healed up almost immediately on AR after TSW didn't work at all.

Jeff KastnerHere's a better explanation on the staph. Of course we have it on our skin all the time.. but much different for those with eczema - and it requires a completely different (longer primarily) method of treatment. http://eczemasense.org/eczema-and-staph/

David BuppThat's a website promoting Dr Aron. Sorry, but when I found that out I didn't even read it. It may be true I suppose but it has zero credibility. Would you give credibility to red-skin-syndrome.com?

Jeff KastnerNot at all. I've actually communicated with Dr. Rap. He's completely one-sided in his opinions and he and I had some dialogue going for a while. When I continually questioned his methods, he went quiet. His papers have no verifiable evidence. His latest 'white paper' looked like a high-schooler wrote it... but I read it.. every bit of it. I'm astounded people believe anything he has to say.

I thought you were interested in the truth? You're black-balling a site because it goes against your belief system? That's a report on how staph/eczema works... backed with scientific papers.

Jeff KastnerI just noticed you weren't in the Dr. Aron site either. I guess I'm wasting my time here. You won't read sites because they promote Dr. Aron and you don't join them because of that either? It sounds like you don't want so much the truth as having it your way. Here's the thing.. I've read and studied everything you have (probably more) but you've read nothing I have because of your bias. That's not a guy looking for the truth. Come back after you read up and we'll have a real discussion. Not being rude but you can't possibly understand all of this if you haven't looked into it for some time.

David BuppSo Jeff, what do you think I have gone through for the last three years? I have been repeatedly tested for infections by the country's leading dermatologists and sometimes they turned up positive, usually negative. Whenever they were positive, I followed the doctors recommendation and took the antibiotics. It had no effect on my symptoms. None. Most of my symptoms were not indicative of infections anyway. The itching, the lack of temperature control, the edema, the elephant skin, the insomnia, the zingers, the changes in hair (I used to have straight hair, it's curly now). Are you saying that all these symptoms, all of which I have never had in my entire life, were due to staph infections that the doctors could not find and that medication did not affect? I am cured now, and the only thing I did was stop steroids. That's it. No diet changes, no probiotics, no vitamins, no herbs, no colloidal silver, no blood-letting, no voodoo, no prayer, not even a conversation with Dr. Rapaport. And most important, no steroids of any kind. You say I am black-balling AR. I am not, and in fact and telling you it may very well work for children. Heck, even for adults, although I have not heard of any that are totally free of steroids. They may be a ticking time bomb. I don't know. Time will tell. What started this whole conversation was you blowing off TSW and mis-representing ITSAN members, not me blowing off AR, because I haven't. I am happy for your son. You hurl insults. I don't belong to any AR sites other than this one simply because I'm not going through AR. I've gone through TSW and simply wanted to let people know that people like me exist. The whole staph infection thing makes no sense whatsoever in my case and has been explicitly ruled out, as it has been for many others going through TSW. I'll ask again: What do you think I have been going through for the last three years?

16 comments:

Dave, in my opinion this is not a productive use of your time. Science and medicine are not a product of logic, arguments, and debates. Medicine is a product of the scientific method. TSW will never be proven or disproven on a discussion forum.

If the steroid + antibiotic combination cures eczema then it should be verified in a double blind placebo type of controlled study. It is a fact that steroid + antibiotic is not a unique formulation, pharmaceutical companies sell these compounds already. Aureocort is triamcinolone with chlortetracycline antibiotic made and patented by Mercury Pharma. Fucibet is betamethasone with fusidic acid antibiotic which is made and patented by Leo Pharma.

Usually for the scientific method you start with a null hypothesis and an alternative hypothesis. For example, null hypothesis: steroids control inflammation associated with eczema, alternative hypothesis: only a combination of steroids and antibiotics can control the inflammation associated with eczema. To test this hypothesis you would give patients one of four treatments. Steroid cream only, antibiotic cream only, steroid + antibiotic cream, placebo cream with no active drug.

The result of the trial would clearly indicate reality. I suspect that placebo cream would be the least effective, with antibiotic only cream being equally ineffective. I also suspect that there would be no difference between patients on steroid cream only and the combination steroid/antibiotic cream. I also suspect that everyone on the Aron regime could switch to steroid only cream and not see any difference in their skin condition. That being said, it doesn't matter what I think, all that matters is what can be proven with data.

I get that Dr. Rapaport can be an easy target, but he's not the only one that has published research on TSW in academic journals and he's not the only that has treated TSW patients. There are a dozen or so doctors that have their names on TSA/TSW research articles. I do not have a medical degree and until I have an MD or PhD I have no choice but to listen to the different voices in the medical community. I can't discredit Dr. Aron because I am not a licensed professional nor do I have any qualifications in medicine or pharmacology.

If I believed that steroids + antibiotics was the answer, I would like to know why broadband oral immunosuppressants like cyclosporine and methotrexate are effective in treating eczema and topical steroid withdrawal. I am not a doctor, but I am pretty sure that neither of those drugs have antibiotics or are used to treat staph infections. If I believed that steroids + antibiotics was the answer, I would also like to know why the experimental drug dupilumab works so well for eczema and TSW. It's a monoclonal antibody that blocks IL-4 and IL-13 and has no antibiotic component.

Good luck with your mission, from what I have seen online Jeff K. cares deeply about his son and will do everything in his power to keep his son from suffering. At the end of the day we each have to live with the tough decisions we have made.

Fantastic post Maximus, and this is exactly why doing this IS worth my time! Thank you so much. I know there is link to here on it, but can I share this on the https://www.facebook.com/ARvsTSW/ page so it gets better exposure?

Interesting... I have a few things to mention. I hate to sound like a conspiracy theorist. However, I noticed this in the ESTIN website

"A meeting of the Dermatology Working Group – supported by an UNRESTRICTED GRANT from LEO Pharma – was set up to address concerns expressed by the Skin Care Campaign about the confusion that exists around the appropriate application of topical steroids – an issue pertinent to the majority of patients being treated for skin conditions. Having reviewed the evidence – or lack of it – concerning the harms of the most commonly prescribed topical corticosteroids, the group considered whether a revision of the advice to healthcare professionals and to patients concerning the appropriate application of these important agents was needed."

I also noticed that the company LEO pharma of course created the product "Fucidin", which is used as the antibiotic compound that Dr.Aron prescribes as well as "Fucicort" which is the antibiotic ointment that is mentioned in this post which combines Betamethazone and Fucidin.

There might be a financial link between the use of TCS + Antibiotic with LEO Pharma and that of Dr. Aron. Or perhaps that is where he was inspired with his idea...

I'm a little late to the party here but still wanted to put my two cents in. Anyone who believes using ts and antibiotics to heal the skin from ts damage simply are not using common sense. Staying on ts even if it is intermittent usage means the problem is only delayed (postponed), and a much bigger price will be paid for it down the road. Kind of like our current economy.

The skin does indeed get addicted to ts, and that is an obvious fact. Another obvious fact is ts do very serious damage to our bodies. This is why so many haven't healed 100% after years of doing tsw. However, the difference between being on ts and reaching the point where they no longer work and the suffering involved with that and the eventual tsw that must happen is huge. Once we begin tsw our bodies react violently and we suffer immensely for many months. But, as long as we don't smother the skin with crap that inhibits it's healing, most of our symptoms are reduced by about 90% within a few months of beginning tsw. So, a few months of intense suffering followed by years of minor skin problems. I'll take that any day over continuing ts use.

As for DSS baths, they work wonders for the skin and are a great tool for early tsw when the skin is horribly broken. Just a tool. A very effective one I might add. As is exposure to direct Sun on the skin. Using both in early tsw along with not moisturizing is highly effective in early stage of tsw.

As far as being in tsw for years and not being 100% healed, I really don't know what the answer is for that. But I do know 90-95% healed beats the alternative so many take. For me, I think my immune system may be screwed up from the ts damage done. All I know is my body's ability to keep my childhood eczema in check since my late teens is now compromised, and seems like it will be for many more years. But again, I like where I'm at skin wise compared to where I was at 3 years ago using ts for sure! Using ts to get off ts is idiotic. I tried using them twice in the last 3 years for about 5 days both times. Just got the same ole quick heal followed by a reversion to where I was at before taking them after stopping. The second time was worse and I got zingers back for a brief period of time. I also just very recently tried a strong course of prednisone. Same results. My experience doing this showed me that if I use either oral or topical steroids again, I will surely revert back to the very beginning stages of my tsw progress skin wise. I expected he oral course I did wouldn't work but wanted to find out for sure. What I found out was steroid induced eczema popped up on areas that were clear since about month 6. So, each time I have tried steroids, my body has lost more of it's ability to heal that it had gained since day one of my tsw. That's a strong testament to just how damaging ts really are! I feel sorry for anyone who thinks they can use ts to get off ts.

Hi Dan! Hey, I just now noticed this (I gotta check my blog settings as I should get a notice) and wanted to thank you for contributing. Also, I completely agree with what you said. As I type this I would say I am up to 99% healed, and like you I will be (almost) perfectly happy if this is as far as I get. My skin is perfectly normal with occasional dry spots popping up (especially now in winter) and there's some residual itching on the top of my right foot. I am delighted that my privates are back ton normal. I just returned from a cruise where my daughter got married. I had a blast and didn't even think of TSW. That said, I am still expecting a flare this summer, but each one is less severe. Cheers and hugs from Texas!

Hi Dave, I got your reply from that older post and thought I'd write here. I haven't been doing too well lately. I got hit with a 3 year anniversary flare this summer (I guess), and managed to spill gasoline, heating oil, and other crap on my hands working on the house as well. Needless to say, that didn't help matters. Late in the year I decided to try a course of prednisone to see if it would get me over the hump. My skin cleared and I got relief for about a month, but once I tapered off I not only regressed back to where I was, I regressed much further back. Rashes broke out everywhere. My hands got so bad I could barely hold a coffee cup. It's been about 10 weeks since my last dose and I feel as though my skin is finished falling apart and back to healing. I started doing frequent dss baths again and experimenting with a Calendula salve.

I just read your entire blog trying to find out what you did moisturizer wise and couldn't find anything. Did you use moisturizers the entire way? I know how bad off you were and I experienced all the same symptoms. The most dreadful bone deep itching one could possibly imagine. The emotional wrought this brought on after many months of severe pain. The depression, etc. Rereading your blog reminded me of what we went through in excruciating vividness!

Anyhow, I found out the hard way that a short course of oral steroids is a horrible mistake for anyone who is in tsw, even near the end, and I want to spread the word. I also am very interested in how you healed to where you are at right now. Since I'm trying moisturizers for the first time in 3 years I wanted to find out if you used them in the last few months. Your healing gives me new hope at a time of near desperation, especially knowing how bad off you were. And, after reviewing your old pictures today.

I honestly think my overuse of ts screwed up my immune system's ability to manage my eczema (hadn't had it since I was a teen, but do now) and psoriasis. And, I now have asthma, something I have never had but runs in the family. Best, Dan

It's about a year and a half since itching started. I'm about a year into Red Skin Syndrome and six months into TSW. My back, stomach, and upper thighs are very itchy, but the worst parts are my lower legs and feet--that's where the original itching was before I started steroid creams. My husband and I can both see progress in how my legs appear, but the itching and burning is just as bad or worse.

I've mostly been going to the TSW-RSS Facebook page for support (i.e., mostly for that misery-loves-company feeling; extending compassion and advice to others makes it better, too), but, as you know, there are a lot of people there who believe in hocus pocus. Did you find the ITSAN forum a better place to go for support?

Hi Nina! I hardly go to the actual ITSAN forum anymore, but it may be a better place to go if you are going through TSW and don't buy into, as you perfectly describe it, "hocus pocus". There are so many Facebook support groups now that I lose track, so I usually go to the official ITSAN one. I've noticed a shift in the support groups going away from the Dr. Rapaport theory of just leaving things alone to a being a soap box for everyone's unfounded alternative methods. I can't help but speak up, but it usually just pisses people off. I also only post about 1/3 of the responses that I write. I let loose and write a response, then reconsider and don't post.

You're welcome to send those responses directly to me. Then we can figure out whether you might want to post them after all, and if you do, I'll chime in and support you. Is there a non-public place I can send you my e-mail address?

P.S. The reason I say the above is that, while the original poster is likely to be attached to the idea that some alternative activity they participated in "fixed" their TSW, I believe there are many readers who would benefit from posts that say, "Relax. As hard as it is to do nothing, nothing is basically all you gotta do. No matter what you do or don't do, as long as you don't go back to using steroid creams, it'll go away eventually." (By the way, I have a hard time convincing my friends and loved ones of this "do nothing" idea. We live in a society that always dictates, "Do something!!" It's only because I consulted Dr. Rap, and that he is a "real doctor," that they calmed down and have (mostly) stopped trying to give me advice on how to get rid of this thing.). Oh, and speaking of being attached to one's ideas, have you seen this? It speaks strongly to me about what I’ve observed as far as people reacting to the idea of changing their beliefs: http://theoatmeal.com/comics/believe_clean

Hi Nina! Aaack, I am so behind on my e-mail and it notifies me when someone posts here! Just now saw this. Probably the best way to communicate privately would be through Facebook messenger. Unlike this blog, I am on Facebook every day. I just sent you a friend request. And oh, I LOVE The Oatmeal! I actually posted that link on my Facebook page a bit ago.

"Addiction to (Topical) Steroids is a serious problem which reaches tragic proportions in some cases. It is more common than realized, sly and seductive and will be prevented only when the physician becomes as impressed with the capacity of the steroids to do harm as they are with their power to suppress, not cure, virtually any inflammatory disorder." - Dr. Albert M. Kligman M.D. Ph.D. and Dr. Peter J. Frosch M.D., International Society of Topical Dermatology Journal, 1979